Victoria or Others RE: Lyme Testing

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Oct 23, 2006.

  1. Mikie

    Mikie Moderator

    Victoria, I know you know which test is the best for detecting Lyme Disease. My neighbor's daughter up in Mass. is in horrible pain and her doc, who is a good infectious disease specialist, thinks it may be Lyme. Her Mom doesn't know which test he used but he drew blood and sent it off. I told her I would ask you which test is most reliable just in case they get a neg. result with a different test.

    This poor young woman is in pain and, of course, worried about what is causing this. The doc is also considering other things. I am impressed that he started by trying to eliminate Lyme. So many docs miss it during the elimination process.

    Thank you so much in advance for your help. Hope you are doing well. Still trying to sell you house? I've given up and will likely stay put. Prices are down about 17 percent and it's really hard to sell right now. Builders have cut back and that's good news. If the hurrican season continues to be light, the market should start back up in a year. In the meantime, I do love it here and I am homesteaded, so my taxes are really, really low as I've lived here almost 10 years. I don't think I could live this cheaply anywhere else. We have no state income tax and it only costs me about $50 to pay taxes on my car and license it. Thank God for tourists and snowbirds!

    Love, Mikie
  2. Mikie

    Mikie Moderator

  3. ANNXYZ

    ANNXYZ New Member

    Igenex Labs western blot test is THE most accurate .

    I hope you do not think me intrusive, but if YOU have not had one, it would be a good investment of about $ 200 .

    I had CFIDS / FM ten years before getting diagnosed and I would have NEVER dreamed it a possibility . I know you have struggled a long time too .
    Blessings to you !
  4. Mikie

    Mikie Moderator

    I really appreciate your answer. I'll talk to my doc about it. Blessings to you too.

    Love, Mikie
    [This Message was Edited on 10/23/2006]
  5. Gosia

    Gosia New Member

    Hello Mikie

    I did Iginex test. Came negative. So i don't have lyme or I have it for so long that my body don't produce the antibody anymore. So I went to Lyme Board. They are talking about Bowen test for lyme, which the test is based on " green field micoscrope" or something like that. They are able to determinate if you have lyme in very short time. It costs about $ 250. Only doctor can order it.

    BTW.
    I always wanted to ask you ( since you are familiar with doctor Clark), do yoy belive in her theory about parasites?

    Thankyou, Gosia
  6. Mikie

    Mikie Moderator

    I'm not sure which theory this is regarding parasites. I use the zapper but I do not embrace most of her theories. It's not that I think they are wrong, it's just that I'm not sure she is qualified as a medical expert.

    She believes we are better off with no teeth than with root canals and crowns. I just can't go along with that even though she may be right.

    Love, Mikie
  7. Gosia

    Gosia New Member

    Hello Mikie.

    THank you for your respond.

    And yes, I like my teeth the way they are.

    This doctor belives we all have parasites. And this is the reason for our sicknesses. The best, she insists that the parasites are not only in our colon, but in the organs themself??!!!Also, that parasites are the carries for our viruses and bacteria. What do you think about that?

    Thank you, Gosia
  8. victoria

    victoria New Member

    Sorry I missed your post - I had a couple of sleepless nights and was crashing during day, ie, effectively brain-dead so wasn't on computer. Seem to be in a cycle of that, not sure why...

    As usual there's a lot of controversy... the ILADS and LDA organizations say Igenex is the best lab to get the Western Blot done thru, that other labs do the Western Blot but Igenex has a more careful way of doing it. The NY Times published an article casting doubt on Igenex a bit over a year go by saying the FDA was 'investigating' or words to that effect, but they were undergoing normal re-certification required of every lab every 2 years or so. They were recertified with no problem. The PCR is considered to be a waste of money.

    And of course the CDC original guidelines were to dx by the 'clinical picture' and not to rely on blood testing alone, as no blood test is 100% reliable... I say 'original' as I'm not sure if it's changed... big ongoing political controversy, plus the Infectious Disease Assoc. has now just issued their own new 'guidelines' that dictate 28 days of abx regardless of onset and duration of symptoms, and says it very very rarely requires any more than that. They also say that if symptoms persist, it has become an 'autoimmune disease'!

    If the daughter remembers recently really being ill with a flu-like illness and then got all her symptoms quickly, usually at least 2 months of abx is recommended by LLMDs as the replication rate of lyme is 28 days.

    If it's been longer, the 'rule' LLMDs have generally followed is to continue abx for 2 months longer after all symptoms are gone. Different abx may be needed to be tried, and flagyl should also be pulsed as it kills the cyst form. Most LLMDs will often try different abx, at least in chronic cases, to see what works best, ie, produces the biggest herx that the pt can stand.

    My son, with 'chronic lyme', has always been pulsing 2 different type of abx at the same time, with 1/4 of the time pulsing flagyl while taking the others, since the beginning of treatment. We know he had it at least 3 years prior to dx because of symptoms, and it has been now 18 months of treatment; progress has been slow, but slowly working.

    At least she's in a New England state, some of them (not sure about Mass.) have passed legislation making access to prolonged abx 'legal' (ie, doctors can't be harassed) and making insurance pay for it, since it is becoming so common there.

    I think it's smart to wait on selling your condo, given all that's happened with the economy and hurricanes! -- altho I know you'd like to be closer to your family.

    With having had a better hurricane season, and if it stays 'quiet' relatively for a few years, I know the Florida markets will rebound. I know some areas in the panhandle went 6+ months without one sale, and the one or 2 properties in other areas that did sell, sold at 2003 prices. So if you can wait it out, the better.

    Especially if the north has a really bad winter or 2, LOL!

    We haven't sold yet... We'd signed a year's contract with our realtor as she's been able to stir up the most action; it will be up end of Jan or so.

    It really doesn't matter if it sells or not, in one way... as I like where we live if we have to stay here, which will be until at least our son is better;

    AND I'd hate to have to find another house that we might easily end up wanting to sell in a couple or 5 years, as I basically dread the act of moving! The longer we stay, the better for us too very possibly...

    Also our needs will likely change since they already have in the past 6 months. My inlaws came to live with us about 16 months ago, but my FIL died last spring and my MIL all along has been slowly but steadily going downhill with vascular dementia. In fact she now gets some hospice care as she is unable to make sense/understand anything most of the time, can barely walk... we've really seen her steadily go downhill since coming to live with us, poor lady.

    So all in all, we are considering taking it off the market for a few years and maybe doing some updates for ourselves at least.

    OH and did you see the doctor to schedule surgery yet, and do you have a 'date'? Cant remember when it was supposed to be... my memory's been erased by the sleepless nights!

    all the best,
    Victoria







    [This Message was Edited on 10/24/2006]
  9. Mikie

    Mikie Moderator

    This info really helps. I suspect that few people with Lyme get the correct ABX right away and get better in 28 days. My guess is that, like with the mycoplasmas, people don't seek treatment until they just don't get over what they thought was the flu.

    I'm sorry you have had so many problems with your inlaws. Bless you for caring for you MIL. You've really had a full plate.

    Just like you, I really don't care if I sell or not. Thing is that before the bubble burst, I could have sold for a lot more and bought something less expensive, allowing me to pay cash and having money left over. Still, I think things happen for a reason and that I am supposed to stay put. Maybe that's why the house deal in Athens fell through.

    It's supposed to be mid-2008 before the prices are back up to what they were a year ago. I've been though many a boom and bust in CO and I know the market can bounce back sooner than that. It all depends on how much the developers cut back on building and whether people will still want to buy a second home here or move here for retirement. A lot of younger people are moving here too because there are more than just low-paying service jobs here now.

    I might just stay put regardless because I'm not sure I can live more cheaply elsewhere. Our neighborhood is determined to not let this place go downhill as some other ones have at this age. Most of the places in here are about 15 years old and are needing some repair but we are getting it done. We have the best, and biggest, swimming pool of any of the villages and are in a prime location with new villages all around us.

    If I can get to feeling better, I can fly up to see Andy and the kids. I fly for free. They can come down too.

    I'm waiting to hear on the surgery. SNAFU with the ins. co. and the hosp. One hosp. group bought out the other and it's just crazy. I expect to hear today. I'll let y'all know if I hear anything. In the meantime, I have to go to the mgmt. co. office for a teleconference call to the other board members up in Mass, the same couple with the sick daughter, so we can finalize our 2007 budget for our bldg. It's hard to do a budget when we don't even know how much we will be paying for our ins.

    Take care. I keep you in my thoughts and prayers as I do all our members. These illnesses hit us so hard in so many ways.

    Love, Mikie
  10. victoria

    victoria New Member

    Hope things have worked out so you get your surgery ASAP!

    Please let me know what happens with your friend's daughter? I'm curious how things are changing - or not - up there.

    Sounds like you're in an ideal place... many people actually prefer older construction because of the building shortcuts taken nowadays so you may be better off - esp if you have the best swimming pool, LOL! I would think that would count for a lot! Plus the fact you can fly for free - sounds like you have it made!

    Take care,
    Victoria